The Good Doctor

Carter had an appointment with his Pulmonologist today to discuss the results of his sleep study.  After I left, I started to think about how much I really appreciate her and everything she does for Carter.  It's a long drive home, so I had a lot of time to process what had happened and how I felt about it. 

It seems like ages ago that we were sitting in the hospital room with a doctor who looked like he couldn't be more than twelve years old.  This doc was pretty much telling us that Carter needed a Tracheostomy, and he needed it now.  Many of the reasons he gave were valid, but we just couldn't bring ourselves to take that step quite yet.  I'm not even sure that this particular doctor ever even used Carter's name.  It seemed as though he was more intrigued by Carter's genetics than by Carter himself.  It was at that point that we made a turning point in our parenting style for Carter.  Up until then we had taken everything that the docs had told us almost as the word of God.  It didn't matter that we didn't really think that he needed a heart cath....we agreed to it because the doc told us it was the right thing to do. After nine days in the hospital (because of the heart cath) we knew that we absolutely had to stand up for what Carter needed.  We had enough of the hospital treating our son like a guinea pig because of his genetics.

That wasn't the only time that Carter was treated that way.  After his cleft lip/palate surgery, we had a resident who was going over Carter's history with us.  Granted, Carter's medical files can be quite overwhelming especially when it's the first time you get his case, but he was only supposed to spend one night in this unit before being discharged. As this resident checked him over, I did not get a warm fuzzy feeling AT.ALL.  She kept drilling me about all of his medical problems and asked me over and over what was being done for each and every.little.thing.  After her exam (when I started getting a bit nasty with her), she told us what her "plan" for Carter was.  She acted like she was taking on the role as his new Pediatrician and wanted to change his feedings and such. Instead of one more night in the hospital, she was acting like he was going to be there for a few more weeks while she put her "plan" into action. Then she proceeded to tell us "obviously I can't fix everything that is wrong with him on this visit, but I'll do what I can".  What?!  Carter had been doing wonderfully and just needed to finish recovery from his surgery.  We weren't there for anything else. This experience just made us even more protective of him.  The point I'm making is that I can't stand it when some of these doctors act like Carter is just a giant folder of medical history.  He is a person too.  Yes, his genetics are a little different, but he is a person and deserves to be treated as one.

I know that this is probably not making any sense, but it is something that I thought about as I took my long drive home today.  We had such a good visit with the Pulmonologist and I realized that part of the reason was that this doctor treats him like a person.  She continually played with him during the entire conversation.  She kept telling him how cute he was and how proud of him she was. She couldn't wait to see who he would grow into and couldn't believe how far he had come.  After reading his sleep study, the doc decided that Carter just needs a little more Oxygen while he sleeps.  We're upping him to 1 liter at night, and she told me that we could take him off of the O2 during the day as long as his saturation stays in the 90's.  For the most part he can do room air while awake, so we just need to get him used to it a little more.  The doc did tell me that she thought that some other docs might not care for her decision to not try him on CPAP, but she was looking out for Carter and truly thought this is what is best for him.  She told us to come back in ONE YEAR (wow!) for another sleep study UNLESS anything came up that we needed her for.  She told me that she is always there for Carter. Oh, and she also said that she expected that his next sleep study will have improved significantly over this one.  Only time will tell.

BAHA ~ Bone Anchored Hearing Aid

I met with the new ENT yesterday, and was very impressed by his plan for Carter.  He thinks that it would be a good idea to get Carter started on a BAHA implantation during his next surgery.  The doc thinks that even if Carter has perfect hearing in the left side, it would be an advantage to him to have this placed as well.  So far, Carter would be the perfect candidate for this procedure, but we won't know for sure until after the big hearing test next week.  Here is a link to the information about the surgery: Bone Anchored Hearing Aid .  If you scroll to the bottom, there are pictures to give you an idea of what it looks like.  There is one little negative to this which would be that Carter will have to wear a very soft headband to hold it in place until he turns 5 years old. It's not as bad as it sounds, and I wish that I could find a picture online, but I can't seem to find one.

I also talked with Carter's Pulmonologist today.  He's been doing much better since the steroids, but still struggles at times.  I explained to her what he was doing, and she's decided to put him on an inhaled steroid.  It's a type that they typically give to Asthma patients and will be administered through a puffer with a spacer.  Hopefully this will help him.

Not much more going on.  Carter's been giving his Daddy smiles all night which Michael is just loving.  He's also increased his feedings from 80 ccs to 140 ccs (which is a little over 4 ounces). Holy cow!  He's really starting to pack on the pounds now!

Teeth?! Really?

OK, so I've been terrible about Blogging lately.  Sorry. Here's the update on what our little man is doing.

First, Carter was on steroids for five days to try and strengthen his airway.  They have seemed to work and he's doing much better although he still has an occasional bout with it tightening up.  Those moments are really scary so we're glad that they are declining although we would be happier if he didn't do it at all. We're just going to give him more time to heal.  The weaning of his Oxygen is going pretty well.  He's comfortable at a 1/4 liter which is about where he was way back before the Heart Cath.

Developmentally Carter has been doing some VERY exciting things.  He's started to focus on objects and turn his head to follow them.  He's also taken a liking to the TV (especially Football....not sure where he got that from lol!). As I type this, he's playing on the floor and looks like he's so close to rolling onto his tummy. His eating has been going well, and he weighs about 10 lbs. 10 ounces now.  The last week I've actually felt like I've had a "normal" baby for the first time.  He seems to be like a 3 month old which is about where he should be for his adjusted age.  Our next feat is to get him to start batting at objects.  He seems to be so close to doing it.

Today while I was playing with him I noticed a little white slit on the top of his gum.  I can't believe it, but our little guy has actually gotten his first tooth!  It is on his upper right.  I'm not sure which tooth it is because of the way his gum is shaped on that side, but I'm guessing it's his front right.  He's growing up quickly now!

On Monday he has an appointment with an Audiologist to find out how his hearing is now that the tube in his left ear has been placed. We're hoping for good news.  It would be nice if his hearing was excellent because it would mean that we might not have to do anything for the right ear.  We can only pray!

Mikey and Jovie have been enjoying school.  Life is certainly a lot busier once your kids are old enough to have activities.

The Memo

Carter had the big appointment with his Pulmonologist today. It was supposed to be the one where we got him started on BiPap. Well, evidentally the doc got the memo that Carter's a Rock Star because she was "Very Impressed" with how "wonderfully" he's doing. She couldn't be happier with his labwork from his last hospital stay. We now have a new plan in place. Hooray!!

First, she wants to put him on a steroid for the next five days. He's been having some struggles with his breathing whenever he gets really upset. It typically results in him passing out which is always a lot of fun for Mommy and Daddy. The doc thinks that his airway is really vulnerable, and the steroids will help to strengthen it a little more. From everything she described, we think that she's right....at least we're praying she is lol! The next plan is to start weaning him down on his Oxygen. The doc thinks that keeping him on a 1/2 liter is actually making him retain more CO2, so our new guideline is to keep him weaned to the smallest amount of O2 that we can get away with. We're supposed to call her in a month to schedule a sleep study where we'll decide if he really does need a CPAP or BiPap machine. We're going to just keep on keepin' on until then.

The Official Update

I know that I haven't been giving many details about what's been going on with Carter, so I wanted to give one now that he's home and napping comfortably in his play place. As I wrote before, Carter had the cath done on his heart, but had a hard time coming off of the ventilator. What had happened is that during the procedure, the anesthesiologist was reading Carter's CO2 reading off of the vent and it was at 57. A normal person's CO2 is typically high at 45, but Carter's has always run high so they felt that was a pretty good baseline. The problem was that the monitor was wrong because when they took the actual blood gas it came back as 113 (which is REALLY bad). They adjusted the vent accordingly and got it back down to the 50's. We think that is what contributed to Carter's breathing struggles after he got off the vent. Either way, a Pulmonologist was called in to see Carter. He pulled up his history and informed us that Carter has something called Hypoventilation which means that he's not breathing deep enough which is causing him to retain CO2. This is the opposite of Hyperventilation when you have to breathe into a bag to raise your CO2. The doc told us that we had three choices.... CPAP, BiPap, or a Trach (where they put a tube in his throat and hook it up to a vent to help him breathe correctly...this would mean that Carter wouldn't be able to cry or talk let alone function in many ways). Then he continued on to tell us that the CPAP and BiPap were probably not options because of the cleft, so he started pushing for the trach. After thinking about it for like two seconds, we decided that this was NOT a route we were willing to take. Even when Carter was on a ventilator, his CO2 was still high so we don't think that it would help him all that much. The Hypoventilation may be the ultimate demise of Carter, but he's not going to live his entire life hooked up to a machine. We informed the docs that we weren't willing to do this, and even though they pushed us a couple of more times, they finally got the clue that it just wasn't happening. Once the doc took into account the fact that the ventilator didn't seem to help it, he also backed off a little more. We told them that we wanted to bring our little boy home and let him heal from this whole traumatic week, and although they didn't like our plan last night, they seemed to embrace it this morning. The plan is to keep Carter at home under a watchful eye to be sure that he isn't under any respiratory distress. He will have a follow-up appt with his ENT very soon to see if they think that removing his Adenoids, or stitching his tongue down will help with his airway issues. Carter will have his lip/prosthetic palate surgery on August 26th (along with anything the ENT thinks he can do), and afterward he will have another sleep study to see how he is doing with his breathing. If he's still struggling, they will fit him for a CPAP/BiPap mask.

On another note, there was strange development over this week. Remember that Carter has facial paralysis on one side of his face. Well, soon after he started steroids for his lungs, he started to have a lot of movement on that side. We aren't sure what will come of it, but it was still exciting!

One More Night

Carter is going to spend one more night in the hospital. As long as everything goes OK, we should be able to bring him home in the morning. After this is all over, I'll update with all of the medical stuff that's been going on with him. I'm too emotionally drained and just plain tired to put it all into words today.

Sleep Study Tonight

Please pray :) Tonight's sleep study will determine how quickly Carter will be able to come back home. Breathe deep little buddy!

Sleep Study

Well, he's out of the PICU YEAH!! He's going to have to spend a couple of more days in the infant unit because he needs to do a sleep study tomorrow. Hopefully it will go well!

Breathing

Carter is struggling with his breathing. I HATE that we are back here again. He's currently on the high flow Oxygen, but it is possible that he'll have to move to the CPAP machine if he doesn't start to improve. Michael and I are beyond frustrated right now because our little boy was doing just fine at home and making huge gains every day, and now it feels like we're back where we started. The thing is that we were told that he really needed this Cath lab test, and when we asked if we could do another regular echocardiogram just to see if this last one got a bad reading, the doc told us that it wasn't necessary. Well, guess what?!? This test just confirmed what all of the older echos had shown... that the hypertension was just a trace amount, so all of this was for NOTHING. It was a waste of time, and put our baby back in the ICU. I would probably feel a lot different if we had found something that could potentially help Carter in the future, but no...instead it hurt him. I always try to remain positive in the light of the situation, but I'm finding it hard to right now. I'm scared to death that this "one night in the hospital" is going to turn into 1 week, then 1 month and we'll lose all of the progress that Carter has made on his development. I'm really sorry for the vent today... maybe I'll feel a little more positive tomorrow.

Friday

We have to be at the hospital at 7:00 am tomorrow morning to check in for Carter's tests. We've had a lot of questions as to what these tests entail, so here is a basic explanation (from the world of Wiki lol!). A cath lab is when a catheter is inserted into a large artery, and various wires and devices can be inserted through the body via the catheter which is inside the artery. In Carter's case they will be doing this in his heart to measure the pressure each chamber is giving when it pumps blood. The doctor doing this is actually a specialist in Carter's heart condition (pulmonary hypertension), so hopefully he can come up with a really good plan to treat it. Since Carter has that small mass in his heart, this procedure is a little risky, but we're confident that he's in good hands. Hopefully since he's one of the first ones scheduled for tomorrow, he won't have to spend the night.

I got some one-on-one time with Mikey today. He's getting big so fast, and talked my ear off. Unfortunately it was to take him to the doctor. The poor kid just barely started to complain that his ears were hurting, so I took him in to get them checked. Yep, he has a double ear infection. I'm really glad that we took him in when we did because he's starting to really act sick tonight. The meds should kick in soon so he'll be feeling better.